An unsettling component of raising a child with special needs is the sense that, as a mother, my work will never be done.
Of course I will always remain “mother” to my three sons, but not in the same way—James, Justin and Jon are healthy and independent adults, married with children of their own. But for Jill, my 22-year-old daughter with severe intellectual disabilities, independence is an impossibility.
My husband, Lon, and I will never taste the sorrow or know the joy of an empty nest. We will remain Jill’s parents as day-to-day, minute-to-minute caregivers. Even though it isn’t any mother’s dream to raise a child with special needs, over time—through tears and heartache and vigorous kicking at the goads—I have grown to embrace Jill as God’s calling for my life.
The hope of eternity
Caring for Jill is an enormous responsibility. She has a rare disorder called Dravet syndrome which causes years of uncontrolled and catastrophic seizures. Jill’s seizures didn’t appear until she was a seemingly perfect and healthy three-month-old baby, but over time they ravaged Jill’s brain, wiped out the milestones she had met, including all of her speech, and left her unable to mature intellectually past toddlerhood.
Although meeting her needs is daunting, I think I am probably like most people: I have good days and bad days. Much of the time I want to soak life up, living each day I am given with gratitude and for the glory of God. Other times, I have a desperate longing for heaven. The Bible says that no eye has seen, no ear has heard and no human mind has conceived the things God has prepared for those who love him (1 Cor. 2:9).
There is great comfort in knowing that I cannot even conceive of how wonderful heaven will be. The pain and sorrows of this world will pale in comparison. Like the old hymn says, “the things of this world will grow strangely dim, in the light of his glory and grace.” After years of loving and caring for Jill, this promise means so much. No matter your circumstance in life, keeping an eternal perspective is key.
For us, Jill is an omnipresent reminder that this life isn’t all there is, and that we can’t even begin to imagine how wonderful eternity will be.
Grace for today
In some ways, trusting God’s plan for eternity is easier than trusting him for today. The daily grind with Jill drains us emotionally and physically, and for parents of children with severe disabilities, many concerns loom on the horizon.
- Who will care for my child when I can't?
- Who will love my child as much as I do when I'm gone?
- How will we ever have the financial resources to adequately provide for my child through our retirement and beyond?
The burden of carrying all these unknown issues is just too great. I have to intentionally go back and remember God's faithfulness through the earlier years of Jill's life when we didn't know how we would make it through with all of Jill's seizures, constant calls to 911, and sleepless nights. Yet, by God’s grace, I survived all of this with three very active boys who also needed me.
As I reflect on my life, I see so clearly that God not only asks to carry my burdens and concerns, but loves to carry them. It’s my job to let go of my anxiety about the future and acknowledge that God is sovereign and has a good plan for my life and for Jill’s life. I constantly remind myself that the Lord has always been there for me in the past, is walking with me now, and is already in my tomorrows.
Submitting to my calling
Submission always involves giving something up. Submitting to God’s call on my life—being Jill’s mom—means giving up dreams. I dreamt about teaching her to love her life and to love the Lord. I dreamt about sleepovers we’d have, how she’d grow in godly character and meet her prince charming. Grieving the death of all these dreams never really ends.
As friends’ daughters go off to college and get married, I am reminded that Jill will never do these things. Lon will never walk Jill down the aisle. I think it’s important to face these realities as true losses. Jesus said that in this world we would have trouble, but he didn’t say buck up and move on. In fact, he wept at the loss of his friend Lazarus. So I let the tears flow over the dreams I have for Jill that will never be fulfilled.
Submission also means acquiescing to the alternative. Jill is not the young woman of my dreams, but God knew what he was doing. Jill is loving and accepting of everyone she meets. She doesn't see disability, power, success, color or ethnicity. She knows she is loved, and she doesn't fret or concern herself with the cares in this life. She never worries about food or clothing. We have promised to take care of these things and she never doubts that we will.
Jill is a picture of complete love and trust. The same love and trust the Father wants us to have for him.
While I was pregnant with Jill, God gave me Isaiah 41:10: “Fear not for I am with you, be not dismayed for I am your God, I will strengthen you, I will help you, I will uphold you with my righteous right hand.” I want to live out this verse like Jill, never fearing, never dismayed, just relying 100 percent on my Caregiver.
I have learned through the years that whatever I surrender to God, he will use. My life and my calling may not be what I expected it to be, but the truth is that it’s never really been about me anyway. It’s all about him. Life as Jill’s mom has taught me this. I pray that, whatever my calling, I am a willing and malleable vessel for his glory.